The 2017 Oscar-nominated documentary Edith+Eddie tells the story of Edith Hill and Eddie Harrison, who marry in their mid-90s and become known online as "America’s oldest interracial couple". More than an inspiring love story, theirs also is a cautionary and heart-breaking tale about the state of elder justice and guardianship in the US as Hill's daughters battle over her care and the wishes of the couple to remain together. More →
The NYC Elder Abuse Center (NYCEAC) welcomes Bryan R. Hansen, PhD(c), MSN, RN, FNE-A, as a first time Elder Justice Dispatch guest blogger. Bryan Hansen has worked as a psychiatric nurse and clinical instructor at Johns Hopkins University School of Nursing. Along with being a full-time PhD student, he is also an adult and geriatric forensic nurse examiner. The primary foci of his research interests include: 1) elder abuse detection and prevention, and 2) person-centered caregiver strategies to prevent, address, and reduce aggressive behaviors in persons with dementia. Click here to view his full biography and here to visit his LinkedIn profile, and make sure to follow him on Twitter @bryan_hansen_rn.
In this blog, Bryan highlights the impact and challenges that result from aggressive behaviors in individuals with dementia. This information is especially important for elder justice professionals because most aggressive behaviors meet the definition of abuse, and, therefore, it’s important to know how to respond to such behaviors when they arise.
Aggressive behaviors are among the greatest challenges encountered by caregivers of persons with dementia. These behaviors can be embarrassing, socially stigmatizing, and deeply disturbing to persons with dementia, their informal caregivers, and families. Aggressive behaviors can be either physical or verbal, and directed against self, others, or objects. Behaviors may include hitting, scratching, kicking, biting, pinching, spitting, hair-pulling, swearing (also known as cursing), or yelling. These behaviors, occurring in the context of dementia, have been linked to nursing home placement, injuries to both the caregiver and the person with dementia, use of psychotropic medications, and increased health care costs.
For those in professional roles focused on the safety of vulnerable older adults and specifically people with dementia, it is important to recognize the context of aggressive behaviors and their potential impact on informal caregivers. A consideration of the specific challenges individual caregivers face when the person with dementia experiences aggressive behaviors may help us find ways to ensure that persons with dementia are safe and caregivers have the tools they need, both to protect themselves and to prevent, reduce, and manage such behaviors.
As a PhD candidate conducting research on the ways in which informal caregivers react to these types of behaviors, I often reflect on my experiences as a psychiatric nurse in the hospital setting. I was mentored by outstanding nurse leaders, who worked collaboratively on a multidisciplinary healthcare team. The culture into which I was initiated approached patient care with a strong emphasis on respect, dignity, and autonomy. Even in a supportive, team-oriented, and person-centered environment, it can be extremely difficult to find ways to minimize the distress of the person with dementia. It often can take multiple team meetings to identify potential triggers for behaviors, decide how to alter the environment and care plan to minimize triggers, and evaluate how the plan is working.
There are also times when members of the healthcare team need to debrief and recognize how the behaviors of the person with dementia may be affecting them. As a large male of imposing stature, I have cared for people who were less than two-thirds my height and one-third my weight but learned quickly that the size difference was of relatively little importance when the two-fold goal of everything I was doing was to provide person-centered care and to prevent any harm to the patient, while simultaneously keeping other patients, other healthcare team members, and myself safe. This was never truer than when caring for a person with dementia whose behaviors were perceived as threatening or aggressive.
Informal caregivers encounter most of the same challenges, but without the extensive training and support system to address them. The vast majority of informal caregivers fill that role, not because they have ever chosen it as a vocation or because they have been trained in it, but because circumstances thrust them into it. Even if caregivers do recognize they are becoming overwhelmed and eventually decide to seek out long-term care, many institutions will not accept the care of persons with dementia who are experiencing aggressive behaviors toward others. This leaves the informal caregiver in a difficult position. When the person with dementia demonstrates behaviors that may feel extremely threatening to the caregiver, the caregiver has to simultaneously overcome the “fight-or-flight” reaction to fear by neither fleeing nor fighting. While endeavoring to keep themselves safe and the person with dementia safe, they must continue to provide necessary care, often alone, and without respite.
As we work with informal caregivers in our respective roles, it is incumbent upon us to find ways to support them. This is an essential step toward promoting the safety and well-being of persons with dementia. It is imperative that informal caregivers provide care that does not imperil the person with dementia, despite the behaviors encountered. By reflecting on specific challenges that caregivers may be facing, whatever our role, we can be better prepared to begin the dialogue that may mean the difference between safety and peril for both the caregiver and the person with dementia.Please see our post Aggressive Behaviors & Dementia: Tips & Resources for more information about this important topic.